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December 12, 2001        News Morgue Search  www.feat.org/search/news.asp

UK Press Rallies for Autism This Season

·        Cruelty & Prejudices - Obstacles In The Way Of The Disabled

·        Telltale Signs Of Autism

·        Wife of Brit Prime Minister Takes Personal Interest

In Mother’s MMR Claim

·        Single Vaccines: Editorial

·        Reader’s Posts

Fighting Cruelty & Prejudices - Obstacles In The Way Of The Disabled

Independence for the disabled: The Independent Christmas appeal, UK

[By Paul Vallely and Cahal Milmo.]

http://news.independent.co.uk/uk/this_britain/story.jsp?story=109443

How to donate

http://news.independent.co.uk/uk/this_britain/story.jsp?story=109444

It was dark outside. But Emma’s eyes were not on the cold night air at the pleasant townhouse she shares with her mother and father in the north London borough of Camden. Instead, as she sat in her special, wheeled dining-chair, her eyes were transfixed by the TV screen on which a favoured video, The Wrong Trousers, was replaying for the umpteenth time. She did not blink.

As she watched, she hungrily devoured her favourite meal, spaghetti with tomato sauce covered in what she calls “Parma and cheese”. After eating she shifted across to the computer and loaded a succession of computer games before fairly swiftly announcing, in a one-word demand, that she wanted her mother to help her upstairs to play pool.

The snooker table dominates her little bedroom. She plays on it for two or three hours a night; her obsession with it has brought enormous improvements in her co-ordination and motor-skills. Leaning on the table she has even learnt to take some steps unaided.

Emma was a premature baby who, at birth 10 years ago, weighed 1lb 6oz.  As the months and years went by her parents realised her birth complications had not just produced some paralysis to her left arm and leg but also an effect on her brain, producing some of the impacts of epilepsy, cerebral palsy, autism and sensory maturation difficulties.

Despite all that, or perhaps because of it, Emma, a pretty little girl with her hair in pink-banded bunches, is a happy child. But 3,000 miles away there was a different story.

That same night in a two-room, windowless, mud-brick hut in the dusty West African provincial town of Bobo-Dioulasso , in Burkina Faso, another little girl was telling her tale. Coulibaly is disabled too. She lost her leg in an accident with a rifle when she was two. But there was a melancholy about her.

Coulibaly, her hair combed into dreadlock plaits above her long, thin face and expressive eyes, was showing off in the communal courtyard in front of the bedroom she shared with her mother, brother and sister. Supporting herself on her crutch, she was playing her favourite game, hopscotch, and was, she said, hoping that for tea her mother would have been able to afford her favourite food, canned tuna. Girls this age – Coulibaly is 13, and Emma nearly 11 – are keen on “favourite” things.

Emma will almost certainly never meet Coulibaly. They live in worlds separated by a vast chasm of wealth and expectation. It is a gap as wide as the geographical distance that disjoins them. Yet across that great divide is a bond that ties together the way the two girls experience life. For though one lives in grinding poverty in the remote sub-Saharan savannah and the other in the relative affluence of the Western world, what the girls have in common dominates both their lives.

But the pair defy stereotypes. “Sometime people think I feel sad because I look at the other children jumping and cycling, but I don’t,” Emma says through her mother. “I really like to see other children jumping and running about and being silly. It makes me laugh.”

Coulibaly says: “I’m not allowed sport lessons. They gave me a dispensation even though I want to take part. It’s a pity because I would like to be in a running race. I can’t think of many good things about being handicapped.”

In part it is the physical rigour of Coulibaly’s existence that gets her down. Once she could rise at 7am to get to school. But the neighbourhood taxi broke down, and there is no money to fix it. Now she has to get up at 5.30am and to reach the Lycée Provinciale she laboriously walks the three-mile journey along the ochre roads of Burkina Faso, using a crutch to support her body in place of her shattered right leg. “Sometimes I’m late for my lessons,” she says. “That makes me cry.”

It makes her mother, Bernadette, 44, weep too, with frustration at the necessity of her daughter’s daily slog. Life for a handicapped child in the world’s third poorest country, she adds, is “cruel, pitilessly cruel”. The cruelty is not merely physical. Some of her school fellows are nasty, she says. “They call me One Foot and say I’m bad. I wouldn’t want to be in a different school with all handicapped children. But here I do get mocked and teased.”

That phenomenon may be more indirect in the West but it’s still there.  “It’s not the lack of wheelchair ramps which is the real problem for children like Emma,” says her mother, Christina “It’s the attitude of other people, the teachers and education specialists who discriminate against her, and the secondary schools who ask almost as a condition of admission, ‘Does your child do this? Can she do that?’

“Then there are those members of the public who arrogate to themselves the right to make scathing comments in supermarkets about the ‘bad behaviour’ of children with disabilities or utter loud asides like, ‘Fancy bringing a child like that to a restaurant like this’. It’s an indignity.  Emma has a right to belong. And yet we have to fight for everything she needs.”

There is still, almost everywhere, an aura of shame that lingers around disability, and which finds an echo in the distaste and hostility with which the able-bodied world greets those with physical and learning difficulties. Again the starkest manifestation are in the Third World. There is a widespread belief there, as in many parts of Africa, that a disabled child is the result of a spell by a witch. “For me, having a handicapped child is not something to be ashamed of,” Bernadette says. “But they tell me I am cursed.”

The reaction is more subtle in the West but, here too, there is the same desire to shun those with a disability. “There are those who treat you as if you were contagious,” says Emma’s mother, Christina. “The relatives who say, ‘It’s not from our side of the family’ or the friends who ask whether it might be something you did or took during pregnancy.”

Coulibaly and Emma have something else in common. Both have been helped by the two small charities that The Independent has chosen to be the recipients of money raised from readers in our Christmas Appeal this year.

In Burkina Faso, Coulibaly and her mother have been supported by Action on Disability and Development (Add). The charity also runs a co-operative that repairs hand-driven tricycles, and trains disabled women in skills to avoid them being driven to prostitution in the Aids-riven country.

Add also works with landmine victims in Cambodia, where one in 250 of the population is disabled. It helps a co-operative of blind women farmers in Uganda who have been expelled from the individual communities for being “cursed by witches”. It has set up income-generation projects in Lesotho, Mali and Bangla-desh. It presses for disabled people to be included in mainstream decision-making in Zambia, Ghana, Sudan and Zimbabwe and works with disabled self-help groups in India.

In Britain, Emma and her family have benefited from services provided by Kids, including a home-learning programme and developmental play nurseries which, step-by-step, teach children with physical and learning difficulties and skills other children pick up instinctively by observation.

Kids also offers respite care by sending skilled workers into the home—Emma has a helper in developmental play 10 hours a week – and runs an educational advice service to help parents lobby local education authorities for their rights. It runs support groups for the siblings of disabled children as well as family support services and a forum for disabled children, some of Britain’s most under-consulted people, to air their own views on their care.

Over the weeks, The Independent will publish daily accounts of the detailed work Add and Kids do. What will emerge is an in-depth look at a society, at home and abroad, whose attitudes and prejudices are far greater obstacles than anything which can be overcome with a wheelchair ramp.

Christina says: “One of the great myths about disability is that children with these problems are incapable of improvement. They are just written off.” She was 38 when Emma was born and the intervening years have produced a remarkable change in her. “Early on, I suppose, you want your child to be perfect, to redeem your own imperfections. In a world that values people for being beautiful, clever, rich, good talkers it is quite a learning curve to realise we should value none of these things when it comes to considering the worth of a human being.

“You realise people have to be allowed just to be. I wouldn’t say, ‘I wouldn’t have her any other way’, because her disabilities create difficulties for her. But she is a source of never-ending pride and joy.  I’ve realised our daughter doesn’t have to go to Oxford for us to love her.”

Her husband, David, says quietly: “I don’t think I was aware you ever had these negative feelings.” Christina says: “I felt it was shameful and toxic and kept it to myself. But Emma has handed me a purpose and grounded me. I don’t have any existential questions any more. And I have discovered skills and strengths I never dreamt I had.”

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* * *

Telltale Signs Of Autism

As part of The Times Christmas Appeal for The National Autistic Society, our

reporter reveals the difficulties of diagnosing the condition

[By Penny Wark.]

http://www.thetimes.co.uk/article/0,,72-2001571729,00.html

Autism is a condition that responds not merely to treatment, but to recognition. If a child is found to be autistic, the expectations around him can change and pressure can be lifted, and with it the child’s anxiety.

Yet, as many parents discover, it can take years of being shunted from one health professional to another before autism is diagnosed in a child.

Although awareness of autism is growing, there are still doctors who know little or nothing about it. Especially at consultant level, says Dr Judith Gould, a consultant clinical psychologist who is the director of the Centre of Social and Communication Disorders, run by The National Autistic Society.

“Senior people are not always up to date and may not be aware of the spectrum of autism,” she says. “There are still areas where they take a narrow view.”

This year The Times Christmas Appeal invites readers to help children with autism by raising funds for The National Autistic Society. Over the past ten years its Centre of Social and Communication Disorders has led the way in training paediatricians, psychiatrists, psychologists and speech and language therapists to diagnose autism.

Two years ago a study carried out by the society showed that 65 per cent of parents saw three or more professionals before getting a firm diagnosis for their child. Forty per cent of parents waited more than three years for a diagnosis, and 10 per cent waited ten years or more.

“Parents sometimes have a tremendous struggle to get through the system,” says Dr Gould. “Our aim is for people to be seen locally, because then they can be offered ongoing support. But training is essential because autism cannot be diagnosed with a blood test or a brain scan; it is a matter of taking a history and understanding different manifestations.”

For a child of two-and-a-half to three the indications revolve around social interaction. Autistic children do not relate well to other children or their environment, they may hit out. They like routines and are resistant to change. “The autistic child is more interested in leaves on the trees or a particular toy than another toddler sitting beside him. They lack a social instinct.

“We think mothers usually know within the first few months that something is not quite right about their baby. He’s not alert and lively and curious and exploring in an appropriate way.

“Or if a baby is very passive, that is another indicator because it’s normal for babies to cry and be demanding and want cuddles. An experienced clinician can pick it up within the first year or 18 months. Most parents seek help when they see that their child’s language and play isn’t developing,” says Dr Gould.

Parents concerned that their children may be autistic should see their GP and ask for a referral to a child development centre. The earlier the diagnosis, the better for the child and the family. Dr Gould has seen adults given the diagnosis of Asperger’s syndrome at 50. Their condition has not been recognised because they are passive, but they have led difficult lives in which they have been teased and bullied. This need not happen, she points out, and training professionals to diagnose the condition promptly is the way to make the lives of those who have autism easier.

The National Autistic Society: 020-7833 2299; helpline: 0870 600 8585

* * *

Wife of Brit Prime Minister Takes Personal Interest In Mother’s MMR Claim

[By Sarah Womack.]

http://news.telegraph.co.uk/news/main.jhtml?xml=/news/2001/12/11/nmmr11.xml

Cherie Blair has expressed a personal interest in a mother’s legal fight for compensation for a son she believes was brain damaged by the MMR vaccination.

Mrs Blair’s response to emails sent to her by Julie Loch from Wales has raised speculation about whether Leo Blair, now 18 months old, has received the combined measles, mumps and rubella vaccination.

A Downing Street spokesman refused to comment, saying the Prime Minister’s children were entitled to “complete privacy in medical matters”.

But a doctor at the centre of the MMR row said the Blairs should be open about what medical route they had chosen. Peter Mansfield, a Lincolnshire GP who offers single dose injections, said: “If you expect to be some kind of role model, it is important to be transparent.

“It is prudent to be beyond reproach. I do not know what the Blairs’ situation is.” Mrs Blair thanked Mrs Loch for keeping her informed, and said she would be “happy to receive further information”.

The Department of Health retains faith in MMR, insisting that parents have no need for concern. MMR is recommended for children at 13 months and for four-year-olds.

But with fears mounting that the vaccine could be linked to autism in young children, an increasing number of parents are having children vaccinated privately with separate jabs at a cost of almost £200.

A report by the Medical Research Council has concluded that the possibility of MMR causing autism in susceptible children cannot be ruled out on current evidence.

Mrs Loch said her youngest son began to “regress developmentally and behaviourally” when he was two years old.

He is now autistic, with chronic bowel damage which was affecting his gastrointestinal tract. She said “countless medics” had refused to accept that her son was vaccine damaged.

However, her son was among eight cases that had been selected to represented a group litigation case against the vaccine manufacturers. Pat Troop, the Government’s deputy chief medical officer, said she had been advised that the single jabs were not safe.

Dr Mansfield was charged by the General Medical Council’s disciplinary body with putting patients at risk and failing to conform to the recommendation of the Chief Medical Officer. The charges were subsequently dropped.

He said: “The MMR vaccine should not be administered in one dose. When three live viruses are forced alongside each other into the body, they may mutate with devastating consequences.”

* * *

Single Vaccines: Editorial

[In the Scotsman.]

http://www.thescotsman.co.uk/letters.cfm?id=128500

Linda Long, the health development officer for Sense Scotland, makes a valid point when she says that the alarming fall in the uptake of the MMR vaccine may lead to the re-emergence of measles, mumps and rubella (Letters, 7 December). It would be a tragedy if anyone became ill or disabled through the consequences of a large number of children not being vaccinated.

However, how can we justify preventing one serious disability by replacing it with another? If the consequence, for some children, of having this vaccine is autism, then let us take steps to avoid this tragedy, too.

Allowing parents access to single vaccines may not be the long-term solution to this frightening dilemma, but it is what is required now to raise levels of immunisation.

A commitment to real research, which investigates the children diagnosed as having autism and/or the bowel disorder caused by MMR, coupled with a complete review of our whole vaccination policy, may provide a safe and manageable alternative. Until this commitment is made and carried out, allowing parents the choice of single vaccines or MMR is the only way forward.

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Reader’s Posts

We need an ABA Therapist/Shadow two days a week in the Hilton Head, SC area.

Delightful 9-yr old little boy with mild autism. Affectionate, loving.

My 4 year old autistic daughter’s security object has just about

disintegrated. It is a 13 inch soft Goodnight Moon bunny doll. This size

doll is no longer manufactured. I tried to replace it with the new 22 inch

version but she wouldn’t accept it.  She has many rituals associated with

this doll. I am scared she will never sleep after this bunny falls apart. If

anyone has one and is willing to sell I will pay top dollar.

Have just moved to Kernersville, NC from Atlanta.  Looking for an O.T. that

has a lot of experience with children in sensory integration and also

auditory training.  Am also in need of a well trained Speech therapist that

specializes in Autism and Apraxia. This can be either in the Greensboro or

I would like any information you have re: Julie Donnelly.  She is testifying for a school district in a due process hearing.  Contact me privately.

Has anyone received a rhogam injection to protect your unborn child from RH

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